The next item is a statement by the Cabinet Secretary for Health, Well-being and Sport on end-of-life care. I call on the Cabinet Secretary, Vaughan Gething.

Thank you, Presiding Officer. On 27 March this year, I published the updated ‘Palliative and End of Life Care Delivery Plan’. This plan reaffirms our commitment to ensuring people have a healthy, realistic approach to dying, and are able to plan appropriately for the event. We want people to be able to end their days in the location of their choice, be that home, hospital or hospice, and we want them to have access to high-quality care wherever they live and die, whatever their underlying disease or disability.

The Deputy Presiding Officer (Ann Jones) took the Chair.

This plan covers all aspects of palliative and end-of-life care, delivered by both primary and secondary sectors, and involves specialist palliative care services delivered by the NHS and third sector providers. This care also involves recognition of the needs of those experiencing bereavement. It builds on the success of the first plan. It’s been updated to reflect the latest strategic and legislative change and has strengthened children and young people and research sections.

We know that care at the end of life has improved greatly since the publication of the first end-of-life care delivery plan in 2013. Consultants in palliative medicine are now available on call 24/7 across Wales to provide advice and support to other professionals, and to visit patients where required, enhancing the service provided by clinical nurse specialists at weekends. And support is now in place for clinical nurse specialist teams to work seven days a week in acute and community settings. This has provided front-line staff with valuable support at weekends, enabling patients who present at hospital with end-of-life care needs to avoid hospital admission where appropriate and allow patients with complex needs to remain at home.

Funding has also been provided to improve access to hospice-at-home provision, and we have introduced primary care palliative registers so that all general practices have a register of all patients with supportive or palliative care needs. In collaboration with Tŷ Hafan children’s hospice, we’ve established a 24-hour out-of-hours telephone advice service for paediatric palliative care, which is now available across Wales.

Dying is, of course, an inevitable event. While I fully appreciate it is not a subject that many people are comfortable talking about, it is vital that people let their loved ones know how they wish to end their days when the time comes. Planning for the end of life through open conversations can result in a better death and certainly help the grieving process for those left behind.

Last week, I attended the Byw Nawr conference and was pleased to officially launch the new website for advance care planning. Today, people find most of their information online and it will be invaluable to have that resource at their fingertips on the internet. We have also provided £150,000 to train staff in advanced communication skills and end-of-life care. This has enabled colleagues to begin and manage serious illness conversations with patients, families and carers. The end-of-life care implementation board, though, provides strong leadership and oversees the delivery of the plan. As is the case with all of our major health conditions, the board receives £1 million annually to support their identified priorities.

As part of the budget agreement with Plaid Cymru, the Welsh Government allocated an additional £1 million for this year, to further enhance end-of-life care provision. The board has provisionally identified that this funding will be used to pursue a Compassionate Communities approach to end-of-life care, for telemedicine, to further roll out the serious illness conversations training to support the development of an all-Wales advance care planning record, and to take forward research priorities and support GP clusters in Wales.

The Welsh Government also provides approximately £6.4 million in funding to support specialist palliative care services provided by hospices and health boards throughout Wales. This significant investment is a reflection of the importance that this Welsh Government places upon end-of-life care. It’s vital that individuals receive the best possible care in the location of their choice at the end of their days.

Direct feedback from patients and their families about specialist palliative care services in Wales has shown that, over the past year, these services make an enormous difference to people’s quality of life in their closing days. During 2015-16, 93 per cent of the responses to the iWantGreatCare patients’ evaluation of their experience of specialist palliative care were positive. The average Welsh score was 9.5 out of 10 across all domains. This would not be possible, of course, without the dedication and professionalism of our workforce. So, I do want to take a moment at this stage to acknowledge the work of our clinicians, nurses and other staff who provide care for people at the end of their lives. There can be fewer jobs more emotionally demanding, yet more necessary. I am sure that Members across the Chamber will join me in recognising and thanking our staff for their work.

But, dying is a social matter. How well we care for people who are dying reflects on how we care as a society. Advances in modern medicine and treatment have resulted in a growing population living longer with incurable diseases. It is vital that good end-of-life and palliative care is made available across Wales. The updated palliative and end-of-life care delivery plan was developed through effective partnership working. That continued co-operation between the Welsh Government, the implementation board, the national health service, professional bodies and the third sector is key to delivering outcomes at a greater pace and with greater impact. We should all recognise that the challenges ahead are many and significant, but we can look forward to the future with a sense of shared direction and confidence.

This week is Dying Matters Awareness Week 2017, placing the importance of talking about dying, death and bereavement firmly on the Welsh and UK agendas—something I very much welcome, as chair of both the cross-party group on hospices and palliative care and the cross-party group on funerals and bereavement. With an estimated 32,000 people dying in Wales each year, that’s affecting somewhere between 160,000 and a third of a million people directly in Wales each year, many vulnerable to serious additional problems—suicide, loneliness, social isolation, anxiety, depression and social problems from stigma to job loss.

But the majority of end-of-life care in Wales is provided by hospices across a range of settings, including in-patient units and hospice-at-home services. There are lessons that the NHS could learn from hospices and especially about the integration of care services in the home community hospital and hospice. I’ve been asking successive health Ministers and our health Secretary here for many years to ensure that NHS Wales starts asking our wonderful community hospice movement how it can help them deliver more for the resources available—in modern, parlance, designing, delivering and co-producing services with them—and too many still feel that that’s not the case. I wonder if you could respond to that point.

Hospices Cymru, as you’ll be aware, are receiving Welsh Government funding on a ring-fenced basis through health authorities over a three-year period. But that period finishes in 2018. Can you provide assurance to them whether that funding will continue to be ring-fenced when the existing funding expires, because they need to know for their forward planning? If not, can you indicate when you might be able to provide that assurance, or at least information?

At 16 per cent to 20 per cent, hospices in Wales still receive far less Government funding—that’s Welsh Government and Welsh NHS funding—than their English and Scottish counterparts. They also highlight a postcode lottery of hospice services, with a disparity of care available between different parts of Wales. When will the Welsh Government finally, in the context of my previous question, recognise that, by discussing, designing and delivering with them on a more balanced funding basis, it’s win-win for everybody, and the means of delivering in a strict budgetary environment?

The end-of-life implementation board, as you indicate, has been allocated an extra £1 million in 2017-18, and one of the provisional areas identified for that is developing a Compassionate Communities approach to end-of-life care. Two and a half months ago, I attended the Marie Curie lecture on a Compassionate Communities approach to end-of-life care, highlighting the need to provide people near the end of their lives with the support they need to remain in their communities by applying health promotion and community development principles and providing support to those who are dying and those who are bereaved. How, therefore, do you respond, not just in terms of a provisional part of £1 million for one year, but to the call by Marie Curie for Wales to become a compassionate nation, following the lines of a Compassionate Communities model that has successfully been developed in numerous towns and communities around the world, including, they say, Frome in Somerset? It’s not about more money; it’s about using the existing money wisely to improve outcomes and lives.

How do you respond to the calls by Age Cymru on end-of-life care for the Welsh Government to provide direction on effective collaboration between local health boards and local authorities to ensure equal access for older people to hospice care, and for the Welsh Government to carry out robust monitoring of the implementation, delivery and outcomes of its palliative end-of-life care delivery plan to determine whether it is delivering real improvements in palliative care and end-of-life care for older people in Wales? How would you respond to Macmillan’s calls for people approaching the end of their life and who would benefit from the support of palliative care services to be identified so that early discussions might be started about their care, for people’s preferred place of death to be recorded early and for health and social care services to be co-ordinated—

Are you coming to a conclusion, please?

[Continues.]—to ensure that people are able to be cared for and die well in the place of their choice?

Are you coming to a conclusion, please?

It is my final question, so thank you for allowing this. Hospices Cymru support the ‘Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020’ document, drawn up by the palliative and end-of-life care partnership in England across all the sectors, and this has ambitions for each person to be seen as an individual, to have fair access to care, the co-ordination of care and much more. How do you respond to their call for this model to become more integrated into the Wales end-of-life care delivery plan so that we may all learn from each other and benefit together?

Thank you for the series of questions, which I’m aware that the Member has raised on a number of occasions in the past. He is consistently interested in this area, as I’m sure everyone realises. Of course, it was dying matters week last week, that was when I attended the Byw Nawr conference and spoke to them about the work that they’ve done, recognising the work they’ve done in promoting this as a more national and natural conversation to have. There’s more work to be done with them, but more work, frankly, to be done amongst all of us in the communities that we represent.

I certainly don’t underplay the contribution of the hospice movement and the variety of hospices around the country, which were the main focus of the comments and questions that were made. And, in fact, most Members in this Chamber will know of a local hospice where their constituents attend, if not having hospices within constituencies or regions, and I have regularly visited a number of hospices in this role, but also I have two within my own constituency. So, I understand perfectly well the role that they play in engaging with clinicians, in engaging with the public in designing and delivering care around a person that better meets their needs. One of the real significant steps forward in the lifetime of the last plan, which is going to be carried forward in the next one, is actually promoting the Hospice at Home movement so that people don’t need to go into a hospice, necessarily, but providing that hospice care at home, and there are real strides forward that have been made. In fact, in the way that the care is commissioned, it’s a regular part of what health boards do, and that will stay with us, but hospices are very much part of the design and the delivery of this plan, and I don’t necessarily share the Member’s rather pessimistic approach and assessment of the contribution of the hospice movement, both to designing this strategy, being part of how it’s delivered, but also understanding the successful nature of its impact on palliative and end-of-life care.

In terms of the financial matters raised, well, as I’ve indicated, the £1 million goes for each of the major conditions plans, of which this is one. It has £1 million allocated recurrently, and I indicated in my contribution the significant amount, the £6.4 million, that is spent recurrently in this area. I am well aware of the issues in Frome that he mentions, about the Compassionate Communities approach, and much learning has been taken, both by Government officials, the health service, and the third sector, in seeing what’s happened within that particular community, and it’s something for us to build upon here in Wales. And I look forward to having the ongoing conversation that I will have with the end-of-life care board and all of its members and supporters, on how we develop not just compassionate communities but, ultimately, for us to be a more compassionate nation.

I’ll end with your point about outcomes and delivery, because part of the strength of the delivery plan approach that we take is that we take an issue of major significance, we bring together people from Government, from the health service, and the third sector, and individual clinicians who are leaders in their field as well. And there is a constructive and helpful tension there that is created, both about understanding and agreeing on priorities, and those priorities then being carried forward. And the reporting mechanism that takes place is an open and an honest one, and there are times where each of the delivery plans and their associated delivery boards recognise that we haven’t made all the progress we would otherwise want to. I expect exactly the same process here: to have an honest reporting coming in about what we have and have not done, and then how we reset our priorities looking forward to the future.

May I thank the Cabinet Secretary for his statement, and for all of the work staff and volunteers in the health service and the third sector do in providing end-of-life care and palliative care across Wales? I don’t think there’s much new, truth be told, in today’s statement—although it’s always useful to have an update—so may I refer, perhaps, to what should happen in the mind of one of the organisations involved in the area, namely Age Cymru? I will just list some of the requirements that they have set out.

They want palliative and end-of-life care to be an entirely central part of care planning for those with chronic and long-term conditions. They want better co-ordination between local authorities and heath boards, in order to give equal opportunity for everyone in our older population to have access to hospice care. They want end-of-life care commissioned by local health boards to include comprehensive care for people in care homes. They want every institution and professional worker to have the necessary training and ensure continuity of training throughout their working lives. They want the orders that you do not attempt resuscitation or to cease to provide food or drink not to be put in place without full consultation with family or other carers. Finally, they want an assurance of very careful monitoring on the implementation and delivery of end-of-life care plans so that it does deliver better care. So, although we are in a situation where some steps have been put in place by Government, there is clearly more to be done in the eyes of those involved in this area.

So, three questions emerge from that. One: do you disagree with any of those recommendations, and, if you don’t, when can we be given assurance that those will have been implemented? Secondly, the annual report mentions improvements in palliative care for children—and, naturally, that’s something that we welcome—but there are far too many children who can’t spend their last days in their own homes. Would you agree that there is some work to be done in that area? Do you acknowledge that we need to strengthen services to support the siblings of those who have suffered bereavement? Finally, minority ethnic groups are particularly identified by Marie Curie as an area where services need to improve. So, what does the Government intend to do about that specifically?

Thank you for the series of questions and comments. In terms of the priorities that Age Cymru identify, many of those are already covered in the work that I’ve outlined that the board is taking forward. Part of the strength of the work that we’re doing is having that genuine cross-section of people with a direct interest in the area setting an agreed list of priorities. The difficulty otherwise is that we potentially get different bids made during the year and not having a properly organised approach to improvement, but I think that the list that you’ve identified—as I say, they’re covered in the contribution I’ve already made in terms of the opening of this debate, but also in the priorities that the board has set for itself in the year ahead.

In terms of the second particular issue you raised, about paediatric palliative care, there was a concern about whether this was properly taken account of in moving forward. I met a group of paediatric palliative care clinicians, and it was a very constructive conversation. I think they’ve moved forward, and they’re in a much better place now about understanding and accepting that their issues are properly taken account of, and there was a definite step forward in this iteration of the plans. So, there is progress that’s been made.

But in this and in every other area—almost every area on which I attend this Chamber to speak—there is always more to be done, and always more that we could do. There’s got to be an essential honesty about that as well. That includes bereavement support, again identified in my opening contribution as an area for improvement for the family that is left behind. That’s part of our challenge. It’s also why we’re having a national conversation about this, and why we should take the opportunity to use time in this Chamber to continue to do that. If we don’t normalise the conversation in this place about the importance of it then we’re unlikely to have a national conversation that takes place in a wider part of our society, so that it is a normal conversation that takes place about what we want.

It’s also why the advance care plans website has been launched, and actually having people having that conversation at a time when they can make choices—a much more active choice—about what they would want is a really important thing to do, because lots of people know they’re coming to end-of-life care. All those people that are on end-of-life care registers and receiving palliative care in primary care—there should be efforts made to improve and increase the numbers of people that have actually gone forward and had an advance care plan drawn up that they’ve actively contributed to. We made real progress last year and improved the numbers of people that have a plan like that, but we understand there’s only just over a third of people who are on a primary care register who now have an advance care plan in place. So, significant progress last year, yes, but lots more to do to get people into a place where they can receive the care that they want at the end of their life.

Finally, on your point about black and Asian origin communities in Wales, there is a real challenge here about the sort of care they want to receive. Some of this is about the differing nature of family support that exists in some of those communities, and the way they feel about looking after a relative. Some of it also is the work that Marie Curie themselves had done. I attended the launch of the work, both at the consultation start of it, and then at the final report stage. They recognise that, actually, the hospice movement, as well as the health service, needs to do more to promote the opportunities that exist for end-of-life care and for people to make different choices. There’s something about the health service and the hospice that provide a lot of that care to be more proactive in going out to a number of those communities who don’t take part and don’t take up palliative care in the way that other communities do, to say, ‘This is an option’. I’m pleased to see that they recognise that they had a problem and they want to do something about it, and I’m certainly interested to see that that does take place and, over the time of this plan, maybe seeing more people in different communities around Wales having access to palliative care and making active choices about their end of days.

I declare an interest in this subject as I am the vice-president of George Thomas Hospice Care, based in the grounds of Whitchurch hospital in Cardiff North. This delivers specialist palliative care for Cardiff to allow people to live in their homes and maintain their independence for as long as possible. I think it is an example of good partnership working between the voluntary sector and the statutory sector, between the Welsh Government and the local authority. And, also, I think we would all want to pay tribute to the long-standing investment of the voluntary sector in the hospice movement from which this grew.

I think that this plan is a very important plan, the palliative and end-of-life care delivery plan, and a crucial plan, and I'd like to pay tribute to Professor Ilora, Baroness Finlay, who has been so instrumental in this plan and who is standing down as the national clinical lead for end-of-life care in July. I've worked for many years with Ilora, and I think she's made a tremendous contribution to this area of work.

One of the issues that I'm very concerned about, which the Cabinet Secretary, I believe, did refer to in his introduction, was the really crucial issue of people, when they are very ill, being moved into hospital for treatment when, basically, it would be better if they were to stay at home if the support services there could be given for them to remain at home. And this does happen with many seriously ill people who have been receiving this support, but, when the situation becomes much worse, they then go into hospital. So, it's how we manage to keep people in that situation at home. And I’ve had several examples of that in my own constituency, where, actually, on a weekend, someone who was very near the end of their life was taken into a hospital A&E because the on-call doctor was so concerned about their condition, whereas I think, with a bit more collaboration and working together, they could have remained at home with a bit of increased support. So, I think that is one of the crucial areas, and I wonder if the Cabinet Secretary could say a bit more about that.

I welcome the point made that we need a review of the capacity of existing bereavement services, as I think these are a vital part of planning for end-of-life care. And, in George Thomas Hospice Care, the consultant has described to me about how they are providing pre-bereavement counselling for children who have a parent, or a grandparent, maybe, or perhaps a sibling, who is dying, and she says that this absolutely helps enormously if you do it before the loved person dies and that that does mean you tend to need less frequent follow-up sessions afterwards. So, I wondered if the Cabinet Secretary had any views about that and whether this was something that was happening to any extent throughout Wales.

And then, of course, there is the whole issue of children's services for the small, but very important, group of children who do need palliative care, and I'm sure he is aware of the work of the Together for Short Lives body, which has put forward several proposals.

And then the final point I wanted to make was in terms of advance planning. We have to take account now of the number of people diagnosed with a dementia who will need end-of-life care, and we are having a debate on that later on in the afternoon, about dementia. But, in George Thomas Hospice Care, 75 per cent of their patients have cancer, and, up until now, the next group that they were working with were people with heart disease. But now the next-biggest group is people who have dementia, and I think that that is something that we've really got to take into consideration in planning for palliative care, if people do have a dementia. And I note that—I think it was Macmillan who have said that we need to do a lot of pre-planning with older people, and I think we've just got to take into account the fact that a large number of people have dementia.

And then I just want to say that I do agree with all the issues about, you know, trying to learn perhaps from the Compassionate Communities movement. We do need the big conversation, and we do need to move on to make death much more a part of life.

Thank you. I just want start by agreeing with you on your point about people with dementia and to reinforce the value of having advance care planning so people can make choices when they're in a position to do so, and to actively decide what they would want, rather than leaving it for other people to second-guess what they might have wanted at a different time in their life. And, actually, supporting people with dementia is particularly difficult. I know we'll discuss this later on today, but the process of going through and losing someone, and losing the personality they might have had, or parts of it, and then to lose them physically as well—it is a particularly challenging time for the individual who is going through that and their families as well.

I think I’ve already mentioned the progress on paediatric care, but what I haven’t mentioned, though, is the additional work we’ve had done on the transition between paediatric and adult services. It can be a really difficult time for the individual young person as well as their family, and this can be particularly difficult when relationships are built up through the paediatric service, and how that’s actually transferred on. But we’ve got a particular post within Wales, which is a first, based at the Children’s Hospital for Wales, and that particularly looks at the transition from paediatric palliative medicine into adult.

I recognise the point that you make about bereavement support pre death, about having that conversation earlier, and that’s recognised—the earlier the conversation, the better prepared people are for the bereavement. On your point about George Thomas hospice, you’re right: individual and community investment in creating that movement and then sustaining it as well is a hugely important part of what keeps the hospice movement special and well funded. I also want in particular to recognise the points you make about Ilora Finlay, the clinical lead for Wales, who is much respected right across the UK as a clinician. If you want to sum up Ilora’s view on end-of-life and palliative care, I think it would be fair to say that she says that Wales has much to be proud of, but also much more to do. I think it’s a fair reflection on where we are.

The final point I want to make is on the point you make about maintaining support for people in their last months and year of life. We know that too many of those people have unnecessary hospital admissions, and so it is something that is part of the focus for improvement. The latest figures show that there are 65,000 admissions of people in their last year of life—65,000 admissions into hospital. Not every one of those will be inappropriate, but we recognise that a number are, and with different support that person could be appropriately cared for in their own home. So, that’s a large part of the focus for improvement in the year ahead. So, I think the points are well made, and hopefully next year we’ll be able to report back on progress that has been made for people across the country.

Thank you for your statement, Cabinet Secretary. The sad fact is that while everyone will eventually die, we don’t all die well. Because of the latter, it is essential that we have excellent end-of-life care.

I welcome the Welsh Government’s palliative and end-of-life care plan, and the commitment to improve the care given to those approaching the end of their lives, and those they leave behind. If current trends continue, the number of people dying in Wales will increase by 9 per cent. We know that around 6,200 people who die each year do not get the palliative care they need, but these figures come from Marie Curie, and they’re not coming from the NHS, and therefore don’t feed into the workforce planning.

We need an all-round approach to palliative care, as often the whole family are involved. Therefore it is essential that staff are properly trained to deal with sensitive situations such as this, and it’s pleasing to see that £150,000 is provided to train staff in advanced communication skills and end-of-life care. Although this is a good start in recognising the specialist skills needed, could you provide more information on how many staff you anticipate this will train, and what areas will be covered in Wales? Some may be more than others, due to logistic situations.

Funding to provide access to hospice-at-home provision is welcome, along with palliative care registers for all GPs who have a register of all patients with supportive palliative care needs. Could you also tell me how these registers are compiled? Because there are some people, obviously, without families, who go unnoticed, who become ill, and they’re reluctant to visit their GPs. I wonder how we can reach these people who sometimes—very often, actually—die at home and are discovered days or weeks later. Can we do more to ensure people like this are included?

Also, to bring back something Rhun had said, a Marie Curie report has highlighted, as I indeed highlighted in the last statement, additional barriers faced by bereaved LGBT and BME communities, beyond the universal pain experienced after losing a partner. Despite this, there are no specific actions outlined in the delivery plan aimed at addressing these issues. Cabinet Secretary, do you agree with me that, if we are to improve the end-of-life care for BME and LGBT communities, we must address the shortcomings in this plan?

In England, the NHS conducts a survey of the bereaved called VOICES, and this shows the level of care and support given to families at the end of their loved ones’ lives. We don’t conduct any such survey in Wales. If we are going to ensure that everyone who needs specialist palliative care gets it, and we’re going to ensure that an individual’s needs, priorities and preferences for end-of-life care can be identified, documented, reviewed, respected and acted upon, then we must conduct a survey of the bereaved also in Wales. I see there is no provision for this in the statement.

Rather than relying on data collected through the iWantGreatCare programme, which many patients are unaware of, does your Government have plans to introduce a comprehensive survey of bereaved families in Wales? The website launch of ‘Byw Nawr’ is welcome and is definitely the way forward. However, we must not depend on the statement that nowadays most people find most of their information online. Although this is true, there are many people without access to online services and, therefore, we need to be inclusive.

So, it’s important that this plan is inclusive and beneficial to all. I note that consultants in palliative care are now available on call 24/7. Can you tell me how people will become aware of this service? The work with Tŷ Hafan children’s hospice and a 24 hours out-of-hours telephone call service for paediatric palliative care is essential and is very, very welcome.

I thank all hospital staff involved in this extremely sensitive area, whilst also acknowledging the dedication of families to their loved ones. I recognise the positive ongoing work and the commitment shown by the Welsh Government and the Cabinet Secretary in this statement. However, I look forward to working with you positively and constructively to further improve the services in palliative care. Thank you.

Thank you for the series of questions and comments. On the point about serious illness conversations, I’ll happily provide an update for Members about how many staff have undergone the training in the last year and how many more we expect to have that training over the next year and more as a result of the additional resource we are putting into it.

On your point about the survey of bereaved families and/or patients, I’d be happy to consider whether there is a better way forward from the iWantGreatCare survey, but at this point in time, no-one has suggested to me, and it’s not been an ask from the board, that we need to have a different means of understanding feedback directly from people involved in the care and people who are involved in receiving care as well. I would have expected, if there was a real call for that and there was an inadequacy, that that would have come through the board, both from clinicians who are still champions for their patients, as well as from the campaigning third sector as well. So, if there is real evidence there’s a need to do something different, then I’m open minded about it, but I would need to be persuaded that we don’t currently have an adequate way of understanding the quality and the impact of the care that is provided.

On the same note, on the point you made about the organisation of palliative care, we’ve got more people available at different times in the day now as well. We’ve got a service that is available throughout the week. I’d need to be persuaded that there is a different way in which that should be accessed. Part of the challenge, of course, and one of the points you made earlier, is what happens to those people who die alone in their own homes. Those evens, fortunately, are few and far between.

There is a broader challenge about how we as a society engage within our own communities, with our neighbours, and with our loved ones. Because, actually, if family members are not engaging directly with those people, it’s very difficult to then say it’s somebody else’s problem, whether it’s the Government or the health service. There’s a challenge about how people engage in services. The great majority of people are engaging in health services towards the end of their life. It’s relatively unusual to have a sudden end to someone’s life. It normally comes when people expect that is what is going to happen.

It’s really about how we support people involved in caring for people at the end of their life—those are people in families, friends, and of course professionals in health and care services. That’s how the primary care register is drawn up and maintained. It is exactly that: people involved in care making sure they’re ready and available to make sure we can properly target the resources we do have to properly support the professional and the individual.

The final thing I’ll say, on your point about the engagement, or otherwise, of the third sector and individuals, and engagement with the Government about the survey evidence that exists, is: we actually know, from all the different fields of engagement, that the hospice movement and third sector organisations are part of the organisation that designs and delivers these plans. They’re part of the delivery board. They talk regularly to their health service organisations and individual commissioners as well. That’s part of the strength of the way in which we design and deliver our delivery plans. I want to see that maintained. If people do have real evidence there’s an inadequate source of information, I’ll consider it. But, really, we don’t want to undermine the strength of the board in the process. We do know there’s very real challenge delivered through that, and I think we’re all the better for it.

In welcoming the statement from the Cabinet Secretary, can I put on record my acknowledgment of the huge changes and investment that have been made over the last four or five years in Wales that have substantially changed the discussion we have about these issues, as well as some of the co-operative working that we’ve already heard about in the statement? I welcome that.

However, I want to ask him a more fundamental and different question. Because as his statement points out, we are extending life through medical intervention, but, I feel, not always asking a more fundamental question, which is: is this needed or necessary, or does the patient really want it? We demand and expect dignity in life, and in end-of-life care. It is time to discuss whether we should not have the same dignity and rights extended to those who wish to end their lives at a time of their choosing, whether they’re facing a terminal illness or a debilitating condition such as dementia.

Now, currently, this is not a legal position. It’s been challenged regularly by brave individuals who go to the courts in the position of end-of-life terminal disease themselves, to challenge this position. The most recent brave person to do that is Noel Conway, who has just been given the right to challenge to the Court of Appeal. But I acknowledge that the courts have consistently said—and I tend to agree with them—that this is not a matter for the courts, but a matter for Parliament, and a matter for Parliament to decide. So, I wondered, with the election of a new Parliament, and a new Government, whether the Welsh Government does intend to have this conversation with that Westminster Government, because although the powers are not here, they affect each and every one of us in the decisions we’ll be taking about our lives and the lives of our friends and family.

Can I leave him with a quotation from Atul Gawande, who is a Reith lecturer and who wrote a very, very good book on this whole process of dying called ‘Being Mortal’? What he says is this: ‘For many, such talk’—and by ‘such talk’ he means the sort of thing that I’ve just suggested—‘however carefully framed’—I hope I framed it carefully—

‘raises the specter of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are already being sacrificed...and what if there are better approaches, right in front of our eyes, waiting to be recognized?’

Does the Cabinet Secretary recognise that there are some approaches that should be discussed also?

Thank you for the recognition of progress made and the recognition that’s been made by different parties working through the last Assembly and into this one, and by different people outside this place as well. I think that’s very welcome.

In terms of the broader point you raise, I think that’s going beyond the conversation we want to have about making choices about how we want to die. There is part of it, though, that is still about where we extend life in medical interventions. There’s a challenge here about ‘do not attempt to resuscitate’ notices, and what people would and wouldn’t like. There’s something there again about going back to advanced care planning, and understanding what we want, as opposed to leaving it to a medic to intervene, because the challenge for the medic will be—or whoever the healthcare professional is; there’s been a recent Nursing and Midwifery Council decision on this that I found difficult—about what point should someone attempt CPR or otherwise. Most healthcare professionals will feel that they’re duty-bound to attempt CPR. Now, I think there’s a real challenge there, because there will be times when actually that is probably the wrong thing to do. But the challenge is how you have that conversation that takes account of the professional duties and the ethical duties that individual healthcare professionals have, and also their ability to be a regulated and registered professional as well. So, this is not an easy area—and that goes into the individual conscience choices that you raise about what we would choose to do for ourselves. As well as the gentleman you refer to, I knew Debbie Purdy and her challenge as well about her ability to make choices for herself. I think part of this is that, when we talk about what Parliament decides to do, there isn’t a Government view on this. This is a matter for individuals to decide what they choose to do—how, where, why and whether the law should or should not be changed to make it easier for people to end their life at a time of their choosing. Personally, I find it quite difficult to see people going to different countries to end their life at a time of their choosing. If I were in that position, I’m not sure what I would do, but that’s why it is an individual conscious choice, and I think that’s the right thing for it to be. But, in doing that, I think we all need to take account of the ability of an individual to make their choice for themselves, at a time of their choosing, obviously with the safeguard of the capacity to do so. But, equally, we do have to consider the hazard that we potentially put in the way of healthcare professionals. It’s a difficult and a finely balanced debate, I think, for all of us to have, and almost all of us will come to slightly different conclusions. But I think, absolutely, in the area of where we are now, we need to have a more regular conversation about dying, what it means to us, what matters to us, and what matters to those that are left behind.

I, too, very much welcome this statement today, allowing us to focus on these very important services that matter so much to people and their families across Wales. And like many others, I’m familiar with my local services in Newport, and the St David’s foundation, and I know that they have very impressively grown and expanded their services and presence, not just in Newport, but surrounding parts of Wales over many years, and do provide real commitment and quality of service.

I would like to raise a few matters with the Cabinet Secretary—first of all, specialist prescribing by pharmacists in hospices, and their role with community pharmacists, because I am familiar with the view that they can provide a great enhancement of end-of-life services, entirely in line with prudent healthcare, and entirely in line with allowing people to return to their homes in a timely manner. And high-quality prescribing I think is absolutely central to this area of health provision. So, I would like to ask the Cabinet Secretary what perhaps expanding role he sees for those specialist prescribing pharmacists in taking strategy and policy forward. Also, core funding for hospice services in the community—because, again, I guess many Members are familiar with the pressure that these services operate under, the expanding demand that, obviously, will accelerate with the ageing population that we will have, salary pressures within the services that they provide, nursing and otherwise, and, of course, some of the increasing role that these services will be fulfilling in the future. So, I would be interested in to what extent the delivery plan will prioritise addressing those core funding pressures, because, I think we haven’t seen an increase in that core funding for these services over quite a period of time.

Two other matters briefly, Dirprwy Lywydd—

Yes, you’re out of time—quickly.

Very quickly, then. First of all, there’s the taboo that is involved in discussing these matters. Obviously, today is a way of addressing how we overcome that taboo by the very nature of the statement, and the debate and the delivery plan. But it does seem to me that there was a time when death was much more a family and community experience, you know when bodies were in the home, as it were, and when people took matters into their own hands in terms of how they dealt with death. And it’s very much, I think, been removed from that setting and been professionalised. And it has created a taboo, and we do need to make sure that conversations take place if people are going to think ahead, plan ahead, and ensure that they’re ready for that inevitable end of life. So, I think we do need a cultural change, and I think this is recognised in what the Cabinet Secretary has said, and we need to make sure that that takes place.

No, I’m going to stop you now—

Just on black and ethnic minority services—

Very quickly, because you’ve had three—

Very, very quickly, Dirprwy Lywydd—only to say that we do have an example through Marie Curie of how we can provide an enhancement of service and a greater access. And I think we do need to roll that out, that sort of approach, throughout our communities in Wales.

Thank you. Cabinet Secretary.

I’ll try to be brief, Deputy Presiding Officer. I recognise the points made around the role of specialist prescribing. I recognise the challenges on core funding. It would not be honest of me to say that I can deliver a significant amount of extra core funding. We’re all aware of the pressures on every public service at a time of reducing budgets, and the extra money going into the healthcare budget comes at a real cost to other parts of the service. So, I won’t make promises that I can’t deliver in this or another area. I do recognise the points you make about black and ethnic minority communities, and the progress Marie Curie have made. I think there is a challenge there for the rest of the hospice movement and, indeed, the health service to understand those particular challenges and make better provision.

And finally, this is the point about having a statement, having this conversation—it is still a taboo subject. We need to get back to a point where it is a much more normal conversation. So, I do look forward to having this conversation again with Members, both within and outside the Chamber, about how we’re trying to renormalise a conversation about the most inevitable event. Birth and death are the two inevitable things about our life, and we don’t spend anything like enough time talking about it, discussing it, and then we can all have as good a death as possible.

Thank you very much for that.